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JWorthington
04-22-2009, 08:41 AM
We are scheduled to take Sam in for his capping trial at the end of May and I just had a couple of questions for those who had taken this route to decann.

1) when the child is capped do they cover the entire stoma with tape to make sure they have a proper seal, or do they simply put a cap over the trach tube?

2) After decan, how long is a dressing required over the stoma (Sam's stoma is unlikely to close fully on it's own so he will require stoma closure surgery)

Many thanks
Julie x:)

KJKK8437
04-22-2009, 09:15 AM
Julie -- I have no experience with how this kind of decan may be done, but when we were going in to try ours, I found that GOSH has a great parent guide online for how they decann. It also had some great information on post-decan stoma issues, like secretions and dressings. Of course, as we all know, every hospital can be so different, but I found the article interesting.

It looks like the website has changed since I found the site, but I think this is the same article. http://www.ich.ucl.ac.uk/gosh_families/information_sheets/tracheostomy_ward_decannulation/tracheostomy_ward_decannulation_families_booklet.h tml

Isaac'sMomandDad
04-22-2009, 10:48 AM
Julie,

For Isaac's capping trial, they actually downsized to a smaller trach, then put a plastic cap to cover it. It was pretty easy to remove the cap if he was having problems, just screwed on and off.

As far as stoma, his was surgically closed with repair. For others that I have seen, just some routine dressings and water precautions (like that will be a big deal after a trach) until it closes up or has to be closed.


Lara

faywrayy
04-22-2009, 12:15 PM
Julie, this is exactly how Kate's decann went. She was downsized from a 3.5 Ped to a 3.0 Neo and they put a bright red cap on it. They didn't do anything to the stoma area, so in actuality, it's harder to breathe capped, then decannulated -- make sense? Once she was decanned, they put a Vaseline soaked gauze over her stoma and covered that with a regular gauze and taped them over the stoma. In the hospital, they used gauze that was way too big and cumbersome. Once we were home, we couldn't get Vaseline soaked gauze, so we used 4x4 gauze and just put Vaseline on it and taped it to her neck. They told us to continue doing that indefinitely, but eventually we stopped doing it and went to a regular bandaid (no Vaseline) and only when we went out. At home, the stoma is open. Her closure is scheduled for Friday (provided her bronch goes well) and her stoma has been open since July.

mylesmom
04-22-2009, 12:15 PM
They simply just put a cap over the tube with Myles. He was already using a neo 3.0 so they didn't downsize.

His stoma is still not closed, going on 7 weeks post decann. We go on Monday to see ENT. We use a bandage (guaze and dressing) most of the time but leave it off if the skin looks irritated. At times we've used a plain bandaid as well.

It looks as if he is going to have to have his surgically closed though.....it's still quite open.

Good luck,hope all goes well for you!

KJKK8437
04-22-2009, 02:42 PM
Well, since our five minutes was so different, I'll share it. In the five minutes Alex was in his decann trial, they fully removed his trach and put a pressure bandage over the stoma.

As I understand, it is up to the ENT to decide whether to cap, then remove and cover, or simply to do one or the other.

katie'smum
04-22-2009, 04:24 PM
Hi Julie,

Katie was decanulated this way at GOSH. She had to go in on Saturday and downsize to a 3.0 then on sunday they put the red cap on. She had to wear this for the 24hrs but we could leave the ward and we actually spent a lot of the time at the park! On the Monday after wearing the cap all night they took the tube out. The stoma was then covered with an airtight dressing ( which I must warn you can be quite painful on the skin when removing!). She had to have this dressing on for two days and also had to stay on the ward. After this it was fine to cover the stoma however we liked. We just stuck a piece of folded gauze over it and thats how we have done it ever since.

I hope this helps and good luck!! Will keep everything crossed for you!!

Love,

Bea xx

suzanne2545
04-22-2009, 05:29 PM
We didn't cap but I had to chime in and how stinkin' excited I am for you guys. Remind us. You were told trach for what, 6 months, and it's been . . . how many years!

debvec
04-22-2009, 08:02 PM
Julie, first, yippee yahooeey...second, Amanda did a 6 month capping trial this time, we had an actual plastic cap that sat on top of the trach, kind of like the passey did but it was closed all the time. It was clear/white and I think Shiley makes a version of it but I am sure others do as well. Secondly, Amanda's stoma won't close either, our regime is she wears a band aid over it when we go in public as secretions can leak sometimes. She does not have a pretty stoma, it looks like a big belly button with funky skin stuff going on. At home we let it hang open to help with the break down and redness of her skin from the adhesives from the band aids. We have tried many kinds and nothing seems to work well. She sleeps with it uncovered as well. I am not sure how long Dr. Cotton will make us go before he closes. We will find out hopefully in May. Amanda went 3 months the first time she was decannulated and it never closed. Good luck and how exciting!!!

debvec
04-22-2009, 08:03 PM
ooops..ps, the other reason we cover it is that she leaks air and loses some of her voice through the stoma. Her voice is already breathy so the band aid helps a bit in keeping some of the leakage and moving up through the vocal cords. I think that is it for now!

drct1245
04-22-2009, 10:11 PM
We are scheduled to take Sam in for his capping trial at the end of May and I just had a couple of questions for those who had taken this route to decann.

1) when the child is capped do they cover the entire stoma with tape to make sure they have a proper seal, or do they simply put a cap over the trach tube?

2) After decan, how long is a dressing required over the stoma (Sam's stoma is unlikely to close fully on it's own so he will require stoma closure surgery)

Many thanks
Julie x:)

1) yup - cap over trach like others said.

2) our ENT didn't have us wear any dressing at all - we were told that we could put a bandaid over it, but Ayden HATES it. The ENT said that if the stoma is to close on it's on, it will do so in 6 weeks. B/c we decanned so late in the summer, we had to wait until spring. For some reason the ENT wanted to wait 6 months...??? I never thought to ask why, just assumed it was b/c of the time of the year Ayden was decanned. Hope all goes as smooth as Ayden's did.... very anti-climatic. :)

WeAdoptKids
04-23-2009, 12:33 AM
I know nothing about this, but this is so flippin exciting.

Hugs,
Roberta

My little figther
04-23-2009, 08:02 AM
No experience here... but just wanted to let you know that I hope Sam will be decan soon.
Michelle

JWorthington
04-23-2009, 08:45 AM
Remind us. You were told trach for what, 6 months, and it's been . . . how many years!
4 - 6 weeks Suzanne! and it has now been 4 years, 6 months and 7 days!

JWorthington
04-23-2009, 08:50 AM
4 - 6 weeks Suzanne! and it has now been 4 years, 6 months and 7 days!

1)
Hope all goes as smooth as Ayden's did.... very anti-climatic. :)

Dawn, I can take uneventful, that will be no problem :)

Thanks for all your replies everyone, especially the link Karin, that was great. My main concern was that they were going to try and tape the whole stoma up with the trach tube in place to make sure there is no air leak, Sam would just freak if they did that, and certainly wouldn't keep the tape on - I can't even get him to wear a band aid!!

Julie x

KJKK8437
04-23-2009, 09:24 AM
4 - 6 weeks Suzanne! and it has now been 4 years, 6 months and 7 days!

Not that you counted or anything. LOL! I'm so happy for you.

haltec
04-23-2009, 09:37 AM
I'm so happy for you!

Doc's fenestrated Sienna's tracoe 3.0 before we capped. She didn't have much air leak out of the stoma.

We were told to wear a bandaid for a couple days and nothing after that. Sienna did have some secretions ooze out of the stoma, but not too much. However it didn't close on it's own, but it was very tiny.

faywrayy
04-23-2009, 10:26 AM
Kate's ENT wanted to wait 6-12mos before closing her stoma, which meant sometime during the summer. I asked him to do it in the Spring purely for selfish reasons -- I want her to able to swim over the summer and the thought of all 4 home with me and trips to the pool out of the question made me batty!!

Ainsley's Mom
04-23-2009, 06:18 PM
MAY?! That is so great! I am so excited for you and Sam. Really!